�Quality of life in families of children with disabilities� (original) (raw)

Quality of Life of Families of Early Aged Children with Disabilities

Vzgoja in izobraževanje predšolskih otrok prvega starostnega obdobja, 2022

Family is a primary social community that directs and encourages development of a child, shapes the child's personality, directs its participation in the environment whereas the functioning of a family has a significant impact on the quality of life of all its members. Starting from the point that raising a child with developmental disabilities is a serious challenge for parents that requires greater involvement and increased child care, the aim of this research was to examine to what extent the presence of disability in a child affects the quality of life of the family. As the predictor of family life quality, we highlighted the intensity of problems in the child's behaviour (physical, emotional, social and behaviour in the kindergarten). The survey was conducted on a sample of 81 parents of children in early age (44.4 of parents with children with disabilities and 55.6 with typical developed children. The parents' opinion on the intensity of the behavioural problems and impact of the chronic condition of the child on the functioning of their families was obtained by the PedsQL generic scale questionnaire-the family impact module. The research confirmed that the presence of disabilities and child behaviour problems certainly affect the functioning of the family and that the quality of life of these families differs considerably compared to the ones with typical developed children. Keywords: family, quality of life of the family, parents of children with disabilities, a child with disabilities, typically developed children

Health-Related Family Quality of Life When a Child or Young Person Has a Disability

International Journal of Child, Youth and Family Studies, 2018

Parents of a child or young person with disability face not only the same challenges as parents of typically developing children and young people, but also the extra challenges of supporting the child or young person with disability in such a way as to maximise both their own quality of life (QOL) and family quality of life (FQOL) for all family members. Health-related quality of life (HRQOL) encompasses not only physical health but also mental and emotional health, equally important for FQOL. This article builds on information from previous publications, and illustrates relevant issues and the innovative methods parents, caregivers, and professionals have devised to enhance the HRQOL for children and young people with disability, and to improve FQOL. The author draws upon her personal lived experiences of having two daughters, the eldest an adult with disability, as well as being the medical consultant and manager of a newly created health unit tasked with supporting students with disability, who often have high health needs, in educational settings. The health conditions selected are those that have a major impact, not only on the young person with disability but also on family members. Vignettes, all deidentified true stories, will be included to illustrate the multiple issues faced by children and young people with disability, their families and extended families, and treating clinicians. These stories will hopefully resonate with families in particular.

Family Quality of Life When There is a Child with Disability

2018

Having a child with disability has an influence on parents, family members, and family quality of life (FQOL). Disability-related services and supports become a part of the family's life. Many parents give up their previous occupations such as selfcare, and paid work to be able to provide long-term caregiving. This research investigated parent perspectives of their family quality of life when there is a child with disability. Relationships between early childhood intervention services (ECIS), parent occupations, and FQOL were also examined. The overall aim was to inform research, practice, and policy for families, and ECIS providers. Two mixed methods studies were conducted including 122 participants, and 24 in-depth interviews. The first study included parents of children with disability in ECIS. The quantitative aspect (N=72) used the Beach Center family quality of life survey (BC-FQOLS) and a demographic questionnaire. Twelve semi-structured interviews were conducted from a purposefully selected sample. The second study included parents of school-aged children with disability. The same tools were used. Fifty parents participated in the quantitative study, and 12 interviews were completed. Data for each individual study were analysed using Spearman's correlations, descriptive scores, and qualitative coding analyses. Results and findings from each study were triangulated and discussed. A two-way analysis of variance (ANOVA) was conducted to compare the quantitative scores from the BC-FQOLS, and the demographic questionnaire items from both studies. A comparative analysis of findings from both qualitative studies was also conducted. The final results and findings were triangulated, integrated, and synthesised to answer the research questions. This research found associations between parent occupations, ECIS/ disability-related support, and FQOL in both study groups (ECIS and school-age).

Parents´assessment of disability in their children: Assessment of disability

2022

During a conference on rehabilitation that the Danish Health Authorities held in 2009, I was inspired to initiate clinical research on obtaining better services for children with disabilities, as well as their parents. The late Lone de Neergaard, the head of health planning at the Danish Health Authorities, and Tóra Dahl, a senior consultant at the Danish Health Authorities, chaired the conference. They were then engaged in improving rehabilitation services, and in 2003, they participated in the translation of The International Classification of Functioning, Disability and Health to the Danish language. In 2009, Dahl was engaged in initiating investigations into the implementation of the International Classification of Functioning, Disability and Health (ICF) and a Children and Youth version (ICF-CY) in Denmark. Even then, it was suggested that disability variables in accordance with the ICF scheme could be joined with International Classification of Diseases (ICD10) codes and together provide information on disability across health sectors. Collaboration was initiated and funding obtained via Partnership Project §16, 21, 31, which the Danish Health Authorities administered. Data on the results from visits and revisits in children's homes in 2010 and 2011 were obtained, and, they were handed over to the Danish Health Authorities in 2014. However, the data obtained, combined with the truly inspiring conversations initiated with the parents of children with disabilities, led to the continuation of my research on communicating disability. The research was based on parents' assessments of disability in their children, with the ICF-CY serving as a platform for assessment and as a communication tool. Published works from 2010 to 2018 are the foundation for this thesis. The research was completed during my employment in the field of child neurology at H. C. Andersen Children's Hospital and Odense University Hospital. I would like to thank my colleagues Lone Walentin Laulund, Katrine Ryttov Bergstein, Nina Szomlaiski and Malene Johansen for their wonderful cooperation when it came to visiting the parents of children with disabilities following the children's brain tumour treatment, as well as for their many fruitful conversations about assessments. In addition, I would like to thank social worker Inge Winther Johannsen, consultant Margit Elisabeth Andersen, speech consultants Janni Palle and Ellen Siggaard, occupational therapists Christina Saugstrup Jensen and Marianne Guldberg, and physiotherapist Karen Philipsen for their effort, patience and constructive dialogues regarding arranging, performing and handling data in relation to revisits in the children's homes. For many years, they have all been engaged in evaluating children with disabilities at the Special Consulting Unit, Odense Municipality. My cooperation with social worker Mette Bonderup, who was previously employed at the Special Consulting Unit, Odense Municipality, was truly inspiring and fruitful throughout this study period. She gave me great insights into the social issues associated with caring for children with disabilities and communicating with their parents. Most importantly, my cooperation with statistician Kim Oren Gradel of the Centre for Clinical Epidemiology, the

Family Quality of Life When There Is a Child With a Developmental Disability

Journal of Policy and Practice in Intellectual Disabilities, 2006

Abstract The conceptualization of individual quality of life is reasonably well established, and now family quality of life and intellectual disability is emerging as an important field of study. This article examines comparative family quality of life in three types of families: those with a child who has Down syndrome, those with a child with autism, and those of similar household composition but without a child with a disability. Data were collected using the Family Quality of Life Survey, which was sent to participating families, and by interviews with selected families on a follow-up basis. Data from the 3 groups were analyzed in terms of quantitative and qualitative information. The needs and choices of families were contrasted in terms of the child’s diagnosis. Findings showed that families’ satisfaction and needs varied within the 9 quality of life domains assessed, raising questions of support and care and the ability of families to pursue desired goals. The authors suggest that there is a need to both identify and provide measures of care and support that would enable families to function at an optimum level within their home and community, so they may experience a quality life similar to that of families without a child with a disability.

Quality of life of parents of children with newly diagnosed specific learning disability

Journal of Postgraduate Medicine, 2009

Background: Poor school performance in children causes significant stress to parents. Aims: To analyze the quality of life (QOL) of parents having a child with newly diagnosed specific learning disability (SpLD) and to evaluate the impact of clinical and socio-demographic characteristics on their QOL. Design: Cross-sectional questionnaire-based study. Setting: Learning disability clinic in tertiary care hospital. Materials and Methods: From June 2006 to February 2007, 150 parents (either mother or father) of children consecutively diagnosed as having SpLD were enrolled. Parent's QOL was measured by the WHOQOL-100 instrument which is a generic instrument containing 25 facets of QOL organized in six domains. Statistical Analysis Used: Independent samples t-test, one-way analysis of variance, and multiple regression analysis were carried out for statistical significance. Results: Mean age of parents was 42.6 years (SD 5.5); mothers to fathers ratio 1.3:1; and 19 (12.7%) were currently ill. Only four WHOQOL-100 domains (psychological > social relationships > environment > spiritual) and five WHOQOL-100 facets (leisur > pfeel > energy > esteem > sex) contributed significantly to their "overall" QOL. Female gender, being currently ill, being in paid work, and having a male child were characteristics that independently predicted a poor domain/facet QOL score. Conclusions: The present study has identified domains and facets that need to be addressed by counselors for improving overall QOL of these parents. Initiating these measures would also improve the home environment and help in the rehabilitation of children with SpLD.

A qualitative study of the health-related quality of life of disabled children

Developmental Medicine and Child Neurology, 2007

This qualitative study investigated what disabled children thought most important in their lives and examined how well their priorities are represented in KIDSCREEN, a generic health-related quality of life (HRQoL) instrument. Participants were a subgroup of families who had previously taken part in a study of quality of life and participation in children with cerebral palsy (CP) using KIDSCREEN. This subgroup was sampled purposively, using children's scores on KIDSCREEN and demographic characteristics. Twenty-eight children (15 males, 13 females; age range 8y 3mo-13y 5mo) and 35 parents were interviewed. Ten children were at Gross Motor Function Classification System Level I, 15 were at Levels II or III, and three were at Levels IV or V. Eleven children had unilateral spastic CP, 16 had bilateral spastic C P, and one child had dyskinetic C P. Interviews were audio-recorded and transcribed verbatim. The analysis was based on the constant comparative method and focused largely on the children's data, though the parent data were drawn upon to illuminate the children's data. Four overarching areas of HRQoL were identified: social relationships; home and school environment; self and body; and recreational activities and resources. These generally mapped well to the dimensions and items in KIDSCREEN. The precedence children gave to environmental, social, interpersonal, health, and functional concerns corresponded well with the balance of these items in KIDSCREEN. However, children had some specific priority areas that were not represented in KIDSCREEN. These included: relationships with family members other than parents; inclusion and fairness; home life and neighbourhood; pain and discomfort; environmental accommodation of needs; and recreational resources other than finances and time. We recommend that further consideration be given to inclusion of these areas in the assessment of HRQoL of disabled children.

Family Quality of Life: A Qualitative Inquiry

Mental Retardation, 2003

In this qualitative inquiry we investigated the conceptualization of family quality of life. Focus groups and individual interviews were conducted with 187 individuals: family members (e.g., parents, siblings) of children with a disability, individuals with a disability, family of children without a disability, service providers, and administrators. Data were collected in urban and rural settings to elicit the participants' understanding of family quality of life. Ten domains of family quality of life were identified and described in terms of subdomains, indicators, and key points raised by participants. Implications are discussed in terms of future directions for research and family support. MENTAL RETARDATION VOLUME 41, NUMBER 5: 313-328 | OCTOBER 2003 Family quality of life outcomes Poston et al.